NHS Continuing Healthcare – Frequently Asked Questions
If you’re new to NHS Continuing Healthcare and are looking for advice on care funding, read these NHS Continuing Healthcare FAQs first. The information could save you paying for advice.
These are some of the most frequent kinds of questions families ask, and the information here can help you with your own care situation. Remember that Care To Be Different’s primary focus is NHS funding, not the whole range of local authority payments and benefits.
This NHS funding is called NHS Continuing Healthcare. Many families report being given false information by the health and social care authorities when a relative first needs full time care. As a result, many people end up being wrongly told to pay for care. NHS Continuing Healthcare funding covers 100% of the costs of receiving full time care either at home, in a care home or elsewhere. However the assessment process is not always straightforward and many people report having obstacles put in their way by the care authorities or are simply ‘overlooked’ for funding, whilst others are not even assessed at all. In some cases, many assessments are carried out incorrectly and health needs are ignored.
The following NHS Continuing Healthcare FAQs will give you a better understanding of your own position and what you can do to ensure your relative is properly assessed or reviewed:
NHS Continuing Healthcare FAQs
“I need to know what funding my mother may be entitled to?”
Specific funding entitlement will depend on each individual situation. However, if a person needs full-time care and has health needs, the first thing that should happen is an assessment for NHS Continuing Healthcare funding – not a financial assessment or means-test. NHS Continuing Healthcare is NHS funding and it covers the full cost of care for people who meet certain criteria. Those qualifying are said to have a ‘Primary Health Need’, i.e. their primary need in terms of care is a health need. Read the NHS Continuing Healthcare guidelines, particularly the Decision Support Tool, to find out what these criteria are.
“My father’s had a financial assessment and I need to know what he has to pay?”
“My mother has a house. Does she have to pay for her care?”
“We’ve been told my brother has to pay for his care because he has savings. Is this true?”
This is a vital point – and many families are given misleading information about paying for care. It is NOT a person’s money, home or assets that determine whether they have to pay for care; instead, it is their health and care needs. It doesn’t matter how much or how little money a person has – if they have healthcare needs and they meet certain criteria (as outlined above for NHS Continuing Healthcare), they do not have to pay. Almost always, the first question the authorities will ask a person is about the person’s house or their savings. However, the first question should be about their health and care needs.
“I can’t afford to pay for my husband’s care. What should I do?”
If a person is genuinely shown to have to pay for care, i.e. they are not eligible for NHS Continuing Healthcare funding, no family member or friend should be asked to pay for that care; it is only the person who needs care who should have to undergo a financial means-test. The health and social care authorities should not ask anyone else to disclose their own finances. In the case of a husband and wife or partners, this information from AgeUK may help: Paying for care if you have a partner.
“The NHS said they will only provide Continuing Healthcare funding in a nursing home, not a residential home. Is this right?”
It doesn’t matter whether a person is in a residential home, a nursing home or in their own home – NHS Continuing Healthcare funding is available to all individuals who need full-time care and who meet certain criteria in terms of their day-to-day healthcare needs. The type of home or care facility the person is in is irrelevant. The National Framework guidelines make this clear. Read more about Continuing Healthcare at home.
“What exactly is assessed in NHS Continuing Healthcare?”
Assessors look at health and care needs in 12 different care ‘domains’. These domains are different aspects of health and care, such as breathing, behaviour, cognition, continence, nutrition, mobility, skin integrity, drugs, etc. In stage one of the Checklist assessment process they look at 11 domains, and in stage two, at the full assessment, they add a 12th domain, ‘Other significant care needs’. You can find our more about these domains in the Checklist and the Decision Support Tool documents.
“The social worker insists that my mum will have to pay, because she has a home”
Sadly, many families are told that care funding depends only on a person’s money. This is incorrect and it leads to many thousands of people being wrongly charged for care (and having to sell their home or use life savings to pay for their care) – see above.
“We’ve been told my dad can have a weekly nursing care payment, but not full funding. Why is this?”
The smaller weekly payment is called Funded Nursing Care (FNC). FNC is paid to people in nursing homes who have some nursing needs and is provided by a registered nurse, and yet who are deemed not to meet the criteria for full NHS Continuing Healthcare funding. However, many families report that the FNC payment is often made as a matter of routine without any prior assessment having been carried out for NHS Continuing Healthcare. This is the wrong way round.
“The Continuing Healthcare assessor said that the Coughlan case no longer applies and that we can’t use it to argue our case. Is this true?”
No, the assessor is wrong. The Coughlan case is just as relevant now as it was in the Court of Appeal in 1999. These articles may help:
“We’ve been turned down for Continuing Healthcare and we want to appeal. But how do we actually word the appeal?”
There’s an awful lot involved in putting together a successful appeal, and it’s vitally important to pull together all relevant information about healthcare needs – and to do this with the NHS Continuing Healthcare eligibility criteria in mind. Make sure you’re familiar with the different stages of Continuing Healthcare assessment and appeal and also the National Framework assessment guidelines and funding eligibility criteria. Although this requires a lot of reading and preparatory work, it’s essential if you’re going to be able to make a fist of it and not be overwhelmed by the NHS’s appointed assessors.
In terms of wording an appeal, you need to pull together notes on everything that has been done incorrectly in the assessment process and particularly look at the way the eligibility criteria have been applied. This can be a very time-consuming process if you are going to do the job properly. Don’t forget that you are entitled to seek professional advocacy support at every stage of the assessment and appeal process if y9u need it. Unless you feel totally confident, it is certainly an area where expert help and advice can save you hours/weeks of preparation time, anxiety and stress, and maximise your chances of success. Getting the appeal wrong could cost your relative thousands of pounds a month in unnecessary care fees. There are links to more documents relating to appeals later in this article.
“What do I need to do to prepare for a Continuing Healthcare assessment?”
We could write volumes on this topic alone!
Firstly, you must be familiar with the NHS National Framework guidance and understand how the whole assessment process works. To help get you started, here’s just a small selection of blogs so that you can also learn what to expect. You can find many more on the subject by searching on our Care To Be Different website.
You can also join the conversation on our Facebook page and learn from others who have shared their personal experiences of the assessment process.
“My father has been receiving Continuing Healthcare funding, but now the NHS is threatening to remove it. What can I do?”
CCGs are obligated to carry out reviews of CHC funding initially after 3 months, and thereafter, at least every 12 months. Such reviews are often an anxious time for families due to the fear that they could lead to funding being (wrongly) withdrawn. Good preparation for these reviews is essential. Beware! Annual Reviews can lead to CHC Funded Care being withdrawn. Be sure to provide information on how your relative’s healthcare needs have either stayed the same or increased (if that’s the case). If their needs are the same or greater than when CHC funding was first provided, the assessors will find it difficult to justify removing the funding. Due to the potential risk of an adverse outcome, families often seize this opportunity to seek the comfort of professional guidance and advocacy support.
“My mother has dementia and I don’t have Power of Attorney, and the authorities are refusing to let me be involved in her funding assessments or choice of care.”
This can be difficult. If your relative now lacks the mental capacity to make a Power of Attorney, you may want to apply for a Deputyship Order via the Court of Protection. Although this can take a while to do, and can be costly, it could save you more headaches in the future. Also read our blog: Why you should consider making Lasting Power of Attorney or a Will
Alternatively, argue that you are entitled to act on your relative’s behalf in their ‘best interests’. Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.
“My brother has had a memory test and did very badly and we’ve been told this means the care authorities will now make all the decisions about his care. Is this right?”
This is a very common scenario, and we here from many families on this issue. Reports from families show that there is a huge lack of understanding about this amongst health and social care professionals. Many fail to understand the difference between a memory or cognitive test (such as an MMSE or an ACE-R test) and a Mental Capacity Assessment. They are two quite different things. In a nutshell, a Mental Capacity Assessment determines whether a person is able to make a specific decision about a specific thing at a specific time (such as deciding whether they want to go back home from hospital or go into a care home). Read more here: Tackling consent: Keeping control if your relative lacks mental capacity.
“My father is in hospital but needs full time care. He’s being told the hospital needs the bed and he’ll have to pay for a care home. What should we do?”
As a result of to the COVID pandemic, there still remains an ongoing need for the NHS to discharge patients from hospital as quickly as possible in order to free up beds. However, to help facilitate this and cover the cost, the Government has agreed to provide additional emergency COVID discharge funding for up to a maximum of 6 weeks following discharge from hospital.
So, if you relative is being discharged from hospital into a care or nursing home, and requires a new or additional package of care (eg to help with their recovery, support services, rehabilitation and reablement), they are entitled to receive free NHS funding for the first 6 weeks of their care, or until such later date as their long-term care needs have been assessed and the outcome is notified to them?
This emergency COVID discharge funding was due to end on 31st March 2021 but has recently been extended to the end of June 2021. Thereafter, between July and September 2021, the 6 week post-discharge funding will reduce to 4 weeks. We anticipate that it will then be reviewed again in due course towards September this year.
The follow articles will help:
“My wife has to be turned regularly, she’s doubly incontinent and has to be fed. Surely she’ll be eligible for NHS Continuing Healthcare funding?”
The only way to know if a person is eligible for this is for them to be assessed for NHS Continuing Healthcare. This funding is not dependent on any specific diagnosis, but instead is based on a person’s day-to-day care needs – the whole picture of need.
“How do I get the ball rolling for an NHS Continuing Healthcare assessment?”
Read these articles to give you a good start:
“The NHS assessor said they only provide Continuing Healthcare funding at specific care homes, and we’ll have to move our mother if we want to have any chance of funding.”
This is quite wrong. As long as the care home is able to look after a person, there is generally no reason why NHS Continuing Healthcare funding can’t be paid – assuming, of course, that they meet the eligibility criteria in terms of their healthcare needs. We know of people in top-end care homes who receive fully-funded NHS Continuing Healthcare.
“My sister is in a nursing home and she had an assessment for Continuing Healthcare but didn’t get through. She’s been told she’ll just have to pay the full cost. Is this right?”
Even if a person isn’t eligible for full NHS Continuing Healthcare funding, they may be able to access a weekly nursing care payment- Funded Nursing Care (FNC) – if they’re in a nursing home. This article outlines more about Funded Nursing Care. A person may also be entitled to Attendance Allowance and other benefits.
“My father got through the Checklist assessment for Continuing Healthcare, so surely he should now receive full funding?”
The Checklist is just the first stage. If a person gets through this, they go on to have a full assessment involving an MDT. Read more about the MDT assessment and what to expect.
“The assessor told us we were not allowed to speak during the assessment, and could not be present for most of it. Is that correct?”
No. Families should be involved and their input should be taken into account. You are entitled to have your say and The National Framework guidelines make this clear.
“I’ve been waiting ages for a decision on my retrospective care fees claim, and I’ve just heard that it’s been thrown out. What can I do?”
Make sure that it’s been reviewed properly and be sure to lodge any appeal within the 6 month time limit stipulated. These tips on retrospective claims will help.
For further reading around appeals, take a look at these helpful articles:
“We’ve only just heard about Continuing Healthcare funding and yet our mother has been in care for several years. What should we do?”
If your relative is already paying care fees, and yet has never been assessed for NHS Continuing Healthcare funding, ask for a Checklist assessment as a matter of urgency. Also ask the NHS Continuing Healthcare team at the local NHS why this hasn’t happened before. You can also ask the care home manager, care provider or a social worker why this hasn’t been done before. In terms of making a retrospective claim, you can generally now claim only as far back as 1st April 2012. However, if you were never told about Continuing Healthcare – or you were not told how to appeal after the funding decision last time – you may have grounds to claim further back. You could argue that the care authorities failed in their duty to provide accurate information. Equally, if you were deliberately misled at the time about care funding, the health and social care employees you dealt with may well have been negligent in their professional duty. Plus, the local authority may have broken the law when it effectively took responsibility for care and asked the person in care to pay (see above).
“I asked for a Continuing Healthcare assessment for my mother but was told it’s not worth it because she wouldn’t get it. Is there anything I can do?”
This is a very common problem, and many families are told ‘not to bother’. However, the ONLY way to know if a person will be eligible for NHS Continuing Healthcare is for them to have an assessment. It’s as simple as that. Here are just some of the things families are told to put them off having a Continuing Healthcare assessment.
“We’ve been told it’s very difficult to get Continuing Healthcare and that the scores our dad needs are almost unattainable. Is it worth it?”
We know of people who have succeeded in getting full NHS Continuing Healthcare funding with relatively low assessment scores, and others with significant needs who have to battle all the way. It can be a postcode lottery. However, the Continuing Healthcare guidelines cover the whole of England, and all assessors should abide by them.
“The care home manager told me that there are people worse than my mum in the care home and they don’t get any funding – so neither will my mum.”
Again, sadly, this is very typical. A Continuing Healthcare assessment is not a comparative exercise. It doesn’t matter what anyone else’s care needs are. If a person has healthcare needs, they should be assessed fairly and robustly, regardless.
“I don’t know if my grandmother has been previously assessed for NHS Continuing Healthcare. How can I find out?”
Contact the NHS Continuing Healthcare team at the local NHS Clinical Commissioning Group and ask them to provide you with paperwork to show when, if ever, your relative was assessed. If you contact the main switchboard of the local CCG and you’re told they don’t have a Continuing Healthcare department, keep persevering! It’s not unusual for main reception staff not to know about Continuing Healthcare. Every local CCG has a Continuing Healthcare team, you just have to have patience to get through to the right people.
“We’ve been asked to pay top-up fees, but this is making life very difficult for us. Do we have to pay them?”
This is a very common question from families, and top-up fees are often controversial. This article will help: Are You Paying Top-Up Fees Unnecessarily?
“The care home doesn’t seem to want to help us get a Continuing Healthcare assessment done. Is there any reason for this?”
It could be due to various things, but unfortunately, sometimes there is also a financial conflict of interest for care homes; they receive more money from residents who pay for themselves (‘self funders’) than they do from the NHS through NHS Continuing Healthcare funding. We’ve heard from some families that care home staff and managers have tried to put people off applying and that staff can be less than helpful in the actual assessment process. Care staff may also not know anything about Continuing Healthcare. To succeed with your relative’s assessment or appeal, make sure the daily care notes are up to date.
“I’ve discovered that my mother was previously assessed (and turned down) for NHS Continuing Healthcare, but I knew nothing about it. What can I do?”
Write to the Continuing Healthcare Department at the local NHS Clinical Commissioning Group with a certified copy of your Power of Attorney (or other form of authority) and request copies of all NHS Continuing Healthcare assessments carried out to date with the full rationale for the funding decisions. Also, state that these assessments should have been carried out with your full knowledge and involvement. You can ask for the assessments to be done again.
‘How To Get The NHS To Pay For Care’ – step-by-step book
Many people find this book (available as an e-book or paperback version) a cost-effective starting point: How To Get The NHS To Pay For Care. It takes you step-by-step through the whole NHS Continuing Healthcare process, right from the start, including how to approach the NHS, what should (and shouldn’t) happen, the pitfalls to avoid, what to do and say before, during and after an assessment, what’s right and what’s not, how to challenge decisions, how to pull apart the NHS’s assessment notes, etc. It gives you a firm understanding of the process and lots of useful and practical information. You’ll find more information about the book here.
We hope these NHS Continuing Healthcare FAQs have answered a lot of your questions. If you still need one-to-one advice though for your specific situation, contact our different Advice helplines and speak to a specialist nurse advisor or case handler; or if you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.
If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.